Hi ladies,

Happy New Year,

Just been trying to catch up on the messages. I think you're both awaiting appts with consultant Jolamine and biopsy results Pippin24  Keeping everything crossed and hope you have a gorgeous time away with your grandkids Pippin. Sounds lovely, really hope you will have received some positive news before you go..

Jolamine  are you waiting for results for your husband too? and then waiting to see if you can adjust your meds etc? How are you feeling about the tilt test not ruling anything out? Hope your'e feeling ok and hope a slight tweak of the meds might make a big difference to how you're feeling and prevent any fainting etc. 

My daughter is still not back to school!! She goes back today...longest christmas ever!!...but we popped over to Jersey for a few days to see my parents and family which was so lovely. Ready for some routine now though!!!

I"m feeling good at the moment, my hormones seem to have levelled so other othan a few waves of nausea/hot flushes i'm feeling pretty much back to normal...well a new normal! Having regular blood tests to make sure my body is coping with the new drug, abemaciclib, but so far so good! They can tweak the dose if needs be so we'll see how my body deals with it all...the main side effect is kidney failure so they take regular bloods to keep on top of that! Otherwise all good and am feeling hopeful and optimisitc about a new year with hopefully less hospital visits!...although i think i'm on 5 already and we're only in Jan!!!!

HOpe you're doing ok and keep me posted on any news and results. Sending all the positive vibes your way.

NGS  How are you doing? 

xx

Hi Greeny,

A Happy New Year.

Great to hear from you and to find that you are feeling good at present. Sorry to hear about the nausea and hot flushes. Have you spoken to your care team about these symptoms? There is medication to help with these. I hope that all continues to go well with the tests for Abemaciclib. Your daughter has certainly had a lovely long holiday, but I'm sure that you will have an element of relief to see her back to school. It must have been lovely to be able to pop over to Jersey to see your family for a few days.

We are still waiting for a number of different tests. Hubby is waiting for an op to try and promote healing of a long term infection. He is still waiting on his biopsy results. He also has appointments for his heart and a geriatric assessment next week. I was relieved that my tilt test didn't show up anything untoward, but upset that this still doesn't leave me with any answers. I have been exceptionally tired over the festive period and think that I may have found a solution myself. I had to stop taking one of my Diabetic tablets a year ago and my GP was happy to leave this for a year, before reviewing. I have just taken my blood glucose and it is far higher than it has ever been. I shall monitor this for the next week, before I return to see what my consultant thinks should be the next move, following my tilt test.

I saw my Lymphoedema nurse last week. The new sleeves she prescribed on my last visit, are much more comfortable than my previous ones, but they kept sliding down my arms. She has changed the measurements and prescribed new day and night sleeves for my legs and arms, so I'm hopeful that we're making headway on that front. We certainly cannot complain about the NHS, since we moved down here last year!

Let's hope that 2025 is a happier and healthier year than 2024!

Jolamine xx

Hi Greeny, Happy New Year, so good to hear from you. Pleased to hear you have had a lovely time visiting your parents in Jersey. Your daughter must be happy, having had such a lovely long break from school. Sounds like you're dong well health wise, with only a few niggles. It's good to hear that your hormones seem to be settling. 

I finished my radiotherapy on Christmas eve and all went well. The journey was tiring and I was happy when it was over. I still feel a bit shattered all the time. Not sure if this is to do with the radiotherapy, or the letrozole I'm now taking. I know how you feel, still having lots of appointments. I've already had a scan and  biopsies, which I'm waiting on results for. Also having an echo, appointment with plastic surgeon and waiting for appointment for a DEXA scan. Hopefully things will get quiter for us all soon. Take care and keep in touch. Xx

Happy New Year ladies - finally 

just been trying to catch up on all the news 

Pippin - hope you’ve had a lovely mini break in the woods - do you have the biopsy results yet ? 
what’s next for you treatment wise - and how are you finding letrazole ? 
How are things with your mum ? 

Jolamine - gosh what a lot going on for you and hubby 

really pleased to hear the new sleeves are helping. 
whilst the tilt test hasn’t shown anything I can totally understand how this still leaves you with unanswered questions - I wonder if as you say if could be linked to your blood glucose 

Greeny - how was Canada ? Is the abemacilib similar to letrazole.  Are you having any other treatment as well or is it as you say a case of adjusting to the new normal now.  

Im doing somewhat better at last.  My granddaughter was in hospital Boxing Day with RSV which I caught and progressed to pneumonia so Christmas was a write off sadly.  
this is my first week off anti biotics and steroids and of some normality at long last 

I had a challenging December   My brothers old flat mate was diagnosed with cancer mid November and sadly lost her fight on 11 th December   I was then too unwell to see my brother when he flew over here and equally could not go to the funeral 

furthermore I was dismissed from work on 20 th December on grounds of ill health   
I have been awarded ill health retirement which will be great - when they eventually pay me 

but reality hit me in terms of how much I have lost over this last year   It really is a case of coming to terms with the new normal   I stopped taking letrazole as the pain was unbearable   I started exemestane a few weeks ago so will see how this goes   I’ve been incredibly tired and not sleeping too well but the numbness and weakness in arms and legs  is slightly better 

ii lightened my hair and it is growing really fast now and is very thick again and curly 

I’ve also joined slimming world ( October) and lost 2 stone so grv- that’s my chemo weight 

I have a nifty mobility scooter now so that’s helped - I could scoot round sandringham with the grandauggter for luminate

I’m waiting on appointments - I feel I have to forever chase - I was meant to be seen in breast clinic after 3 months but nothing yet   I have another call with oncologist in March and then continued zometa infusions for 3 years 

I am attending the moving on course end of this month which I’m hoping will help as I feel very much on my own now and it is scary   When I had pneumonia my head automatically went to its back in my lungs   Will that ever stop I wonder 

anyhows let’s hope 2025 is a much more positive year for us all 

xxx NGS 

Hi NGS, so lovely to hear from you. So sorry to hear about your granddaughter being unwell and that you also caught it. Scary that you ended up with pneumonia. Quite understandable that it messes with your head. I think the fear of recurrence of cancer will always be there for us all, unfortunately. Such a shame that your Christmas was ruined, but pleased you are starting to get back to normal.

Sorry to hear about your brother's flatmate being diagnosed with cancer.  Quite a shock that she went so quickly. My sister-in-law died this week from cancer. She was diagnosed a few years ago with the same breast cancer that I had. She went through several surgeries, chemo and radiotherapy. She stopped taking hormone blockers due to the side effects and the cancer returned and also spread to her bones. So sad after all the treatment she went through and also makes me feel anxious about the future. 

Really shocked to hear that you got dismissed from your job over your ill health. Didn't even realise they could do this. Hope they don't make you wait too long for your payout.

Will be interested how you get on with the new medication  after stopping the letrozole. I'm on letrozole and do get some joint pain, which can wake me at night. Seem to be fine during the day though, so not too bad. My mum is also on letrozole, as she's been diagnosed with low grade breast cancer. They don't want to operate as she is 88 years old and also has heart issued, so too risky. Good to hear you have some improvement with regards to issues with your arms and legs. Handy that you have the mobility scooter to help make moving around easier.

Fab that your hair is growing well, I have a bit of a pixie look going on at the moment. Looking forward to when it gets a bit longer. So annoying that you have to chase up appointments, I've had the same myself. My heart echo is overdue, so I chased that up, Appointment with plastic surgeon should have been after 6 weeks  after chasing it up I will see him on 24th January, which will be 3 months. Really hoping he'll give me some idea when next surgery will be. Oncologist also told me on 7th November, they were arranging a Dexa scan. I phoned a few weeks later and was told it hadn't been referred,  so now still waiting. It certainly does get a bit frustrating, having to chase everything all the time. I'm now waiting on results of a recent biopsy, as found a lump in my armpit on reconstructed side. Really not sure whether to phone up, as it's this weekend that we're going for our break in the woods. Really looking forward to it and any bad news would spoil it. 

Love to hear how the moving on course goes, it's something I'm thinking about doing. At the moment I'm still having phesgo injections every 3 weeks and have my next zoledronic acid infusion in February. I also have another surgery to match up my boobs, but have no idea when this will be at the moment. 

Hope this is a better year for all of us, keep in touch when you can. Xx

Hi everyone, hope you're all doing OK at the moment.  Went to see the plastic surgeon today, who told me my biopsy results are clear. It is just fat necrosis from my surgery. Had another small wound opened up on tummy,  but he said its only superficial. He's now booking me in for my reduction of the healthy breast, for about three months time, which I'm really pleased about. Wishing you all a lovely weekend. Xx

Hi NGS,

It's great to hear from you. It sounds as if you've been having a busy time. I am so sorry to hear about your pneumonia, but glad to hear that you have now come off antibiotics. I am still on them, following a chest infection, that I picked up from the rest of the family, on Christmas Day. There is still a crackle in my lower lung, so I have an appointment at the breast clinic on Tuesday, just to ensure that there's nothing untoward there. My diabetes medicine has also been increased. The doctor thinks that the infection may have raised my blood glucose levels, so I've got to monitor them too and see if they settle down once the infection goes away. The specialist Diabetic nurse will phone me in a few days to check. I was quite surprised that my appointment for the breast clinic came through the day after I was referred and is for 4 days time.

I am so sorry to hear about your brother's flat mate, I lost my father-in-law within 5 days from diagnosis and know what a shock it is, when it all happens so quickly. What a pity that you couldn't see your brother when he was over and that you couldn't attend the funeral. 

I am so sorry to hear that you've been dismissed on the grounds of ill health. I hope that you're going to get a reasonable payment and that it comes through soon.

You may have lost a lot in the past year, but you have also gained more than you'll be aware of. I don't think that any of us are the same after a cancer diagnosis. It's a case of trying not to dwell on the past, but to accept the new you and what it and the future, can offer you.

I'm sorry to hear that you had to stop taking Letrozole. How are you coping with the Exemestane, so far? It sounds as if your hair is doing very well now and I hope that you are happy with the lighter colour. Well done for losing your chemo weight. I lost 5 stone after my hormone treatment stopped and felt so much better to be back to a normal weight. I'm glad to hear that you are enjoying zooming around on your mobility scooter. Hubby and I both have one and it gives us so much more freedom to get around the city, go to theatres, clubs, etc, without having to worry about parking. I hope that your breast clinic appointment comes through soon.

Good luck with the Moving On course - make sure to ask any questions you may have and to highlight how you really feel now. Many people feel alone at this stage. I found the course really helpful. This also led to other courses, which also helped.

We all live with the horrible dread of recurrence. You will find that you'll become a little more pragmatic about this, with the passage of time and it will no longer be the overriding thought of each and every day.

Jolamine xx

Hi Pippin,

You must feel so relieved to know that your biopsy results are clear and that you are finally being booked in for the reduction of your other breast. I am sorry to hear that you have another small wound opened up on your tummy - here's hoping that this doesn't take as long as the last one to heal - it certainly shouldn't if this one is only superficial. I hope that you enjoyed your weekend away and that you managed to get out and about despite the rain.

Jolamine xx

Hi everyone, just wondered how you are all getting on. We've had quite a busy time, unfortunately with funerals. Had 3 in the last week, 1 over in Ireland. Supposed to be having my reduction done within the next couple of months, which I'm happy about. This time will just be a day surgery. I've got my second zoledronic acid infusion on Tuesday, last time it made me feel a bit fluey, so will have to see how it goes. The letrazole that I'm taking does effect my joints, usually when I'm in bed, but improves when I'm up and about fortunately. Well I hope you are all doing well, would love to hear from you  xx